Improving Shared Decision Making in Early use of Neurotechnologies Across Different Disease Stages - ABSTRACT Recent research emphasizes the opportunities of using neurotechnology earlier in the disease progression. However, earlier use of neurotechnology also raises significant ethical concerns. There are trade-offs and uncertainties involved in deciding to offer and undergo advanced neurotechnology treatments earlier in the disease progression. This has changed the ethical decision-making landscape for patients and treating clinicians. For patients, it can be challenging to assimilate clinical information and make risk–benefit trade-offs to select the most appropriate treatment. For clinicians it can be challenging to decide when in the disease progression is best to discuss with patient’s advanced neurotechnologies as therapies. While the literature addresses the opportunities that early use of neurotechnologies can bring, there is limited research on ethical concerns and decisional needs around their earlier use among patients, caregivers, and clinicians, and lack of support in decision-making about early use of neurotechnology. This proposed study addresses those significant gaps by (1) identifying neuroethical issues around shared-decision making (SDM) associated with the early use of neurotechnology, and (2) developing and testing a patient-centered decision aid (PtDA) for advanced neurotechnology that can be used at different disease stages. Using a pragmatic neuroethics framework together with the International Patient Decision Aids Standards (IPDAS) Collaboration guidelines our goal is to develop a tool to support SDM and the responsible use of these interventions in different stages of disease progression. To achieve this goal, our established, transdisciplinary research team, guided by a distinguished Steering Group, will answer two questions: (1) Are there any relevant differences in ethical issues and decisional needs when considering advanced neurotechnologies earlier in the disease progression vs. in advanced disease stages? (2) What impact does a PtDA about advanced neurotechnologies have on decision-making about this type of interventions (whether and timing), knowledge and attitudes about them, decision conflict, decision satisfaction/regret, and patient perceived involvement in care? To answer these questions, we will analyze data from interviews and validated instruments (Aims 1-3). We will examine key neuroethical concerns and decisional needs among patients, caregivers and clinicians (Aim 1). These results will inform the development of a PtDA (Aim 1). We will then evaluate comprehensibility and acceptability of PtDA (Aim 2) and evaluate small-scale efficacy and feasibility (Aims 3). The significance of this work lies in the in-depth new knowledge it will generate regarding specific neuroethical concerns and decisional needs raised by the earlier use of neurotechnology among patients and clinicians. Responding to the BRAIN Initiative imperatives, our PtDA will support SDM and ethical use of advanced neurotechnology at different disease stages.
